End-of-life talks difficult but shouldn't be avoided
■ A message to all physicians from Ardis Dee Hoven, MD, chair of the AMA Board of Trustees.
By Ardis Dee Hoven, MD — , an internal medicine and infectious disease specialist in Lexington, Ky., is president of the AMA. She served as chair of the AMA Board of Trustees during 2010-11 Posted Jan. 24, 2011.
Discussions about end-of-life care are on the front burner again, as they should be, given health system reform, our critical updating of medical education requirements and our aging population.
But they are on the front burner for the wrong reason. After being left out of the health reform legislation, new regulations suggested that physicians offer -- and be paid for doing so -- annual discussions with Medicare patients about end-of-life care. The discussions were to be voluntary, not mandated. Then, just five days into the new year, that provision of the regulation was rescinded.
The people in Washington have done a great disservice to America's seniors.
Despite many Americans' general unwillingness to recognize the inevitability of death, every physician should be prepared to talk with patients about what sort of care they expect during their final days, and to update that conversation periodically.
This is called "practicing good medicine." It is not a mechanism to inappropriately limit care or access to care. As these discussions take preparation, thought and time on the part of physicians, they are also something for which doctors should be paid.
We all recognize that conversations about and planning for the end of life can be difficult to initiate. Patients often wait for physicians to broach the subject. Physicians, on the other hand, can be leery of raising the issue, afraid that it might frighten patients or their families.
In fact, it can do just the opposite. This kind of discussion and planning actually can be empowering. It is not about a list of treatments -- yes or no -- but about how a person wants the end of his or her life to unfold. Because it puts the patient in charge, a sensitive, patient-led discussion on expectations and preferences concerning end-of-life care can be of tremendous importance in easing stress, depression, anxiety and even pain for patients in their final days.
Similarly, awareness that such planning has taken place eases the burden on family and caregivers at a stressful time. However, even when a patient has named a decision-maker, that decision-maker may not have much to go on: Currently, fewer than 25% of patients have an advance-care directive in place.
So what should a discussion on end-of-life care cover?
- As time allows, these should be fairly wide-ranging discussions, touching on a patient's attitudes, values and beliefs surrounding health care, illness and death.
- Let the patient lead the discussion regarding pace and subject matter. Some will be more willing and interested in talking than others. Respect their wishes.
- Specifics to be touched on might include a preference for hospice or palliative care versus active hospital treatment, living wills, advance directives and appropriate pain care. These are important discussions that are best held when patients are aware and able to make their desires known.
- Ask if a patient has designated anyone to make decisions when he or she cannot do it himself or herself.
- Make sure that a record of the conversation is kept in the patient's medical record.
- This should not be a one-time discussion. Ideally, discussions should take place during a patient's annual wellness visit, beginning, hopefully, long before death is imminent. That way, as conditions change, the patient's desires are kept up to date.
Odds are that physicians who deal with elderly or very ill patients already have this type of discussion, but advance-care planning is important for any patient, especially those who might be at particular risk of losing their decision-making abilities. After he was diagnosed with testicular cancer and had such a conversation with his doctor, Lance Armstrong reported that he "left home as one person and went home as another."
Not all patients will want to talk about dying. It can be extremely difficult, especially toward the end of a person's life. But the choice of whether to have a discussion should be offered, ideally beginning years before any plans are put into place, thus allowing for a less emotional and more thoughtful conversation.
Although primary care physicians are most likely to initiate end-of-life discussions, any physician should be able to broach the subject if it is appropriate. Having said that, such discussions also can be difficult for physicians. As physicians, we befriend our patients and their families and become connected to them.
The AMA Ethics Resource Center has information available to physicians on end-of-life care, including AMA policies and an Advance Care Planning Guide. American Medical News' monthly Ethics Forum has addressed this issue in a thoughtful way (the Lance Armstrong anecdote was from the link). Also, during the Interim Meeting in San Diego last fall, the AMA Council on Ethical and Judicial Affairs held a special educational role-playing session on advance-care planning.
The Ethics Resource Center also recommends two more online resources. One is the End of Life/Palliative Education Resource Center at the Medical College of Wisconsin (link).
The other is the Center for Practical Ethics in Kansas City, Mo. (link).
So much of modern medicine is about the miracles of high technology that it's easy to lose sight of the most low-tech part of medical practice: the relationship between physician and patient. This is never more important than as a person's life moves toward its close.
The AMA strongly supports end-of-life planning and the use of directives to do just that -- give physicians and families directions as to the patient's wishes at a time when that otherwise might not be possible.
It's a difficult subject, dealing with a difficult time of life, but it's one that neither the medical community nor our society should walk away from.
Ardis Dee Hoven, MD , an internal medicine and infectious disease specialist in Lexington, Ky., is president of the AMA. She served as chair of the AMA Board of Trustees during 2010-11